Family in awe of dying toddler's courage
FOR Burringbar mother and photographer Kelly Ryan, bringing her 'little cherub' home from hospital is the sweetest Christmas gift of all.
However, while she is back in her parent's arms for now, 15-month-old Artemissia is so gravely ill they don't know how many days she will survive.
The toddler that medical staff at Brisbane's Mater Children's Hospital named 'little cherub' is suffering from a rare genetic illness called Sandhoff Disease, an aggressive form of Leukodystrophy, which makes the nervous system rapidly deteriorate.
Little Artemissia can barely move. She has constant convulsions, must be drip-fed and has lost her sight and hearing. There is no cure and infants with the rare disease are not expected to survive past their second or third birthday.
“She only has her sense of touch and smell left,” Ms Ryan said. “When I kiss her on the cheek I know she can feel it because she flutters her little eyelashes and she can curl her little hand around my finger, ever so slightly. That is our only way of communicating now.”
Artemissia's parents have been moved to tears by the outpouring of support from the community, including neighbours, medical staff, the Byron Bay Community Markets where the couple have a frangipani stall, and the Plantasy nursery at Burringbar, where her father, Alex Alexiou, works.
“There has been so much love. It leaves you speechless,” Ms Ryan said.
The past three months have been a living hell for the family after Artemissia lost muscle strength and could no longer sit up properly in September.
“At first I was told she was just developing slowly, but the day before her first birthday we were given the first diagnosis that she had muscle dystrophy and had a life expectancy of 20 years,” Ms Ryan said.
“From that moment on our life has been prolonged pain.
“We started physio and she was showing a slight improvement. Then about a month ago she had a series of life-threatening convulsions. It was horrifying.”
Artemissia was rushed to hospital in Brisbane on November 16, and it was only two weeks ago doctors were able to confirm the correct, and more terrifying, diagnosis of Sandhoff Disease.
In the past four weeks, Artemissia has suffered multiple convulsions and organ failure, withstood all manner of tests and drugs and was not expected to leave the hospital alive.
But last week her condition stabilised enough for her father Alex, a gardener, and Ms Ryan to bring their little girl home.
“We just had to get her home for Christmas. She remembers her home,” Ms Ryan said.
The family are now trained in palliative care and are taking shifts day and night to care for their baby.
“She's peaceful during the day, but at night the devil is at the door. You never know if she will make it through,” Ms Ryan said.
“It's all about her comfort now. We're here to help her stay alive for as long as she wants to be here. She's a fighter. She's braver than anyone I have ever met.”
This Christmas Day will be a quiet one for the family, with a donated Christmas hamper lunch and, most importantly, their baby girl by their side.
Donations to help the family through this difficult time can be made at any Westpac branch.
BSB: 032 584
Acct no: 190 827
Acct name: Ms Kelly Kimborley Ryan as trustee for Artemissia Avalon Alexiou.